Hi all, first off, I’m not the patient I’m the husband! Didn’t know where to post this so hope it’s OK here.
My wife was diagnosed with IDC 11th Oct, mastectomy was done on 31st Oct. We got the lab results yesterday and we’re feeling a bit down. The surgery was successful, good margins etc. There were two tumours, each 10mm, one grade 2 and one grade 3. That part we were expecting as it was in line with the previous scan and biopsies.
The bit that floored us was finding 2.5mm of cancer in the sentinel node. The indications from ultrasound were that the nodes looked normal, so we were cautiously optimistic about the snetinel node result. Looks like that optimism was misplaced. We’re now getting to grips with the idea that we’re stage 2 rather than stage 1.
What’s really stressing us out is that the surgeon has left the next move entirely up to us - the positive node needs to be tackled and there are three possibilities; more surgery to clear all the nodes, radiotherapy to the nodes area or enter the POSNOC trial. This trial is testing the theory that positive nodes don’t need specific treatment as the chemo will deal with them. If we go on the trial, it would be 50-50 whether we get nodes treatment of not.
THe surgeon is saying that there is no clear evidence that any one of these approaches is better than the others, so it’s up to us to choose!!
Here are the conflicting facts going through our minds …
more surgery would mean more delays in starting chemo, and now that we know that cancer may still be present in the nodes we really want to get chemo going asap
radiotherapy is said by some to have lower lymphoedema risk than surgery, but our surgeon said it’s fairly similar
choosing radio would mean chemo could start sooner as there would be no more surgery
surgery feels attractive in the sense that potentially cancerous nodes would be physically removed from the body
I could go on, but I think you get the general idea!
I feel we need input from oncology to help us decide what to do, but our oncology referral has only just started so we’re unlikely to see an oncologist for quite a few weeks. Are all these delays normal? I just saw a NICE guideline about systemic therapy starting within 31 days of surgery, but I don’t imagine we’re close to achieving that.
Sorry for the long post but the last day and half has been very difficult and I’d welcome any advice. Just hearing about other similar experiences would help - in these situations it’s tempting to think that we have been dealt an especially bad hand, where in reality there are probably loads of people having similar issues. Thanks
Nick